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"explanatory power" That term doesn't mean what they think it means.

Count me among those very sceptical of the notion of a baseline. I regard that concept is not only unrealistic and irrelevant, but as being abused to prop up the failed psycho-behavioural-rehab model.

THIS! Don't give me false hope, especially if based on pseudo-science and hand-waving. That is the worst possible response. Exactly what patients do not need. If you got nothing, say so. Admit it. Then, and only then, is it possible to have realistic discussions about ways forward.

No argument there. I didn't mean to be critical of the patient reps, just of the profession's obsession with the 'fatigue' construct.

"fatigue disorders" :grumpy:

Real mystery why people who experience serious deterioration in their health when they do certain things would want to avoid doing those things. Is being wary of going near the edge of a high cliff a 'psychological inflexibility'?

In case anybody does not know, Children's Health Defense (Wikipedia article) is the organisation JFK Jr. helped set up and run to promote scepticism about vaccines and other some public health measures like fluoridation of water supplies.

:thumbup:

There is a blanket ban on blood donation for those with ME/CFS in Australia, which I support on precautionary grounds. I have an uncommon blood type and used to give blood regularly before getting ME/CFS. I decided to stop not long after getting it, years before getting diagnosed, and decades...

Good as far as it goes, and credit to the authors for both asking the question and accepting the implications of the answer. What is the bet that they instead turn to blaming the less regulated, more informal social media, which is often blamed as a primary means for the transmission of...

We recognise that care for people with ME/CFS has varied widely, and in the worst cases has left some people feeling that their illness is not recognised by the health and care system. It has left more than a few people dead, and many many many more with destroyed desperate lives. Either the...

Also, it is not just a simple quantitative improvement (less ME), it feels qualitatively different too.

Can't add anything, or even offer any helpful suggestions. Just thinking of all those caught up in this shitfest, and wishing the best for you. :thumbsup:

30mg is correct. IIRC, in Europe they use the comma instead of the period for the decimal point, to avoid confusion because the period can also represent multiplication.

WTF? o_O Feeling dizzy and lightheaded after a physical blow to the head is psychosomatic?

Thanks for asking. The only low reading I am getting is ferritin, but very low. The other iron measures seem more-or-less okay, including no anaemia. Had real trouble getting the ferritin level to even start coming up, took a year of daily iron to move it from 12 to just 46, which is barely...

Privacy is the most underrated of rights and protections.

I typically feel better in the early stages of a cold or flu, before it hit full strength. Usually only for 24 hours or so. I noticed that before I was diagnosed with, or even knew about, ME/CFS.

There is no 'feel' about it. The disbelief and mistreatment is very real and pernicious. It is not merely dismissive and unsupportive. It has extremely serious adverse consequences for patients.

Way too little, way too late, BMJ. You have blood of millions of cruelly destroyed lives on your hands via your unrelenting unapologetic uncritical support for the psychosomatic cult and its fraudulent claims, and helping it to take such deep root in the entire governance structure. This is the...